There’s nothing that prepares you for hearing your child has an ultra-rare genetic condition, that’s incurable, and has no treatments.

Our sweet girl, Emmy, was recently diagnosed with Gould Syndrome, a genetic disorder that affects the body’s blood vessels.

What makes it especially difficult is how unpredictable it is. It can look very different from person to person. Some have mild symptoms, while others face serious complications like strokes, or vision and kidney issues.

Because it’s so rare, there’s still so much that isn’t known, no clear roadmap, no way to predict how it will affect her, and no established cure.

She is still the same happy, beautiful little girl we love so much…but now we’re living with the weight of the unknown.

And that’s the part that keeps us up at night.

Instead of sitting in that fear, we’re choosing to turn it into something meaningful.

We’re raising money for The Gould Syndrome Foundation to support research, awareness, and families like ours, so that one day, there are more answers.

100% of funds raised will be donated directly to the Gould Syndrome Foundation. Proof of donation and updates will be shared.

If you’re able to give, even $5, it truly makes a difference. And if you can’t donate, sharing this means just as much.

Thank you for being part of Emmy’s story.